Okweraliikirira and Okwenyamira: Idioms of Psychological Distress Among People Living with HIV in Rakai, Uganda.

Introduction: Health and illness experiences are positioned within social and cultural contexts. Understanding the mental health and psychological distress of people living with HIV in highly affected communities is critical to addressing their needs and to ensure programming and interventions are targeted and appropriate. Methods: Grounded in the ethnomedical theoretical perspective, we conducted qualitative interviews to understand the experience and expression of psychological distress by people living with HIV in Rakai, Uganda. Participants included adults living with HIV (n=20), health workers (counselors, peer health workers, nurses, n=10), and key informants (n=12). Interviews were audio recorded, transcribed/translated, coded, and analyzed using thematic analysis. Results: Two idioms of distress, okweraliikirira (worry/apprehension) and okwenyamira (deep/manythoughts/lots of thoughts) were described as impacting people living with HIV. Both idioms were said to be alleviated by social support or counseling, but if left unaddressed could lead to more severe mental health problems and poor ART adherence. Conclusion: People living with HIV understand their psychological distress through culturally specific idioms; such distress can have deleterious impacts on well-being. Incorporating idioms of distress into screening and treatment for people living with HIV may improve identification of individuals in need and overall health services to address this need.

Cognitive interviewing to assess and adapt three measures of mental health symptoms among people living with HIV in Rakai, Uganda: the Thinking a Lot Questionnaire, the Patient Health Questionnaire 9 (PHQ-9), and the Hopkins Symptoms Checklist (HSCL).

Mental health is conceptualized differently across cultures, making cross-cultural validation of screening tools critical. In Uganda, we used cognitive interviewing to assess and adapt three scales for measuring psychological distress: the Thinking a Lot Questionnaire, the Patient Health Questionnaire 9 (PHQ-9), and the Hopkins Symptoms Checklist (HSCL). We recruited 12 people living with HIV from the Rakai Community Cohort Study (RCCS) and interviewed seven potential users of the scales (four RCCS survey interviewers and three local health workers). Data were analyzed systematically using a team-based matrix approach. The HSCL was generally well understood, with minor clarifications needed. The Thinking a Lot Questionnaire was also well understood, though differences between "how much" and "how often" required specificity. Both included local idioms of distress from prior adaptations. The PHQ-9 performed less well, with many questions interpreted variably or showing unclear local applicability, especially among people living with HIV. For example, questions about trouble concentrating were misunderstood, focusing on examples like newspapers rather than the broader issue of concentration. Future research should explore the validity and utility of commonly used instruments as mental health research expands in Africa.

Identifying longitudinal patterns of HIV treatment (dis)engagement and re-engagement from oral histories of virologically unsuppressed persons in Uganda: A thematic trajectory analysis.

BACKGROUND: There is limited study of persons deemed "harder to reach" by HIV treatment services, including those discontinuing or never initiating antiretroviral therapy (ART). We conducted narrative research in southern Uganda with virologically unsuppressed persons identified through population-based sampling to discern longitudinal patterns in HIV service engagement and identify factors shaping treatment persistence. METHODS: In mid-2022, we sampled adult participants with high-level HIV viremia (≥1000 RNA copies/mL) from the prospective, population-based Rakai Community Cohort Study. Using life history calendars, we conducted initial and follow-up in-depth interviews to elicit oral histories of participants' journeys in HIV care, from diagnosis to the present. We then used thematic trajectory analysis to identify discrete archetypes of HIV treatment engagement by "re-storying" participant narratives and visualizing HIV treatment timelines derived from interviews and abstracted clinical data. RESULTS: Thirty-eight participants (median age: 34 years, 68% men) completed 75 interviews. We identified six HIV care engagement archetypes from narrative timelines: (1) delayed ART initiation, (2) early treatment discontinuation, (3) treatment cycling, (4) prolonged treatment interruption, (5) transfer-related care disruption, and (6) episodic viremia. Patterns of service (dis)engagement were highly gendered, occurred in the presence and absence of optimal ART adherence, and were shaped by various factors emerging at different time points, including: denial of HIV serostatus and disclosure concerns; worsening HIV-related symptoms; psychological distress and depression; social support; intimate partner violence; ART side effects; accessibility constraints during periods of mobility; incarceration; and inflexible ART dispensing regulations. CONCLUSIONS: Identified trajectories uncovered heterogeneities in both the timing and drivers of ART (re-)initiation and (dis)continuity, demonstrating the distinct characteristics and needs of people with different patterns of HIV treatment engagement throughout the life course. Enhanced mental health service provision, expanded eligibility for differentiated service delivery models, and streamlined facility switching processes may facilitate timely (re-)engagement in HIV services.

Self-collected samples as an additional option for STI testing in low-resource settings: a qualitative study of acceptability among adults in Rakai, Uganda.

INTRODUCTION: Self-collected samples (SCS) for sexually transmitted infection (STI) testing have been shown to be feasible and acceptable in high-resource settings. However, few studies have assessed the acceptability of SCS for STI testing in a general population in low-resource settings. This study explored the acceptability of SCS among adults in south-central Uganda. METHODS: Nested within the Rakai Community Cohort Study, we conducted semistructured interviews with 36 adults who SCS for STI testing. We analysed the data using an adapted version of the Framework Method. RESULTS: Overall, SCS was acceptable to both male and female participants, regardless of whether they reported recent STI symptoms. Perceived advantages of SCS over provider-collection included increased privacy and confidentiality, gentleness and efficiency. Disadvantages included the lack of provider involvement, fear of self-harm and the perception that SCS was unhygienic. Most participants preferred provider-collected samples to SCS. Nevertheless, almost all said they would recommend SCS and would do it again in the future. CONCLUSION: SCS are acceptable among adults in this low-resource setting and could be offered as an additional option to expand STI diagnostic services.

The negative health spillover effects of universal primary education policy: Ethnographic evidence from Uganda.

Scholars of global health have embraced universal education as a structural intervention to prevent HIV. Yet the costs of school, including fees and other ancillary costs, create an economic burden for students and their families, indicating both the challenge of realising the potential of education for preventing HIV and the ways in which the desire for education may produce vulnerabilities to HIV for those struggling to afford it. To explore this paradox, this article draws from collaborative, team-based ethnographic research conducted from June to August 2019 in the Rakai district of Uganda. Respondents reported that education is the most significant cost burden faced by Ugandan families, sometimes amounting to as much as 66% of yearly household budgets per student. Respondents further understood paying for children's schooling as both a legal requirement and a valued social goal, and they pointed to men's labour migrations to high HIV-prevalence communities and women's participation in sex work as strategies to achieve that. Building from regional evidence showing young East African women participate in transactional, intergenerational sex to secure school fees for themselves, our findings point to the negative health spillover effects of Uganda's universal schooling policies for the whole family.

High Acceptability and Perceived Feasibility of Long-Acting Injectable Antiretroviral Treatment Among People Living with HIV Who Are Viremic and Health Workers in Uganda.

Long-acting injectable antiretroviral treatment (LAI ART), such as a bimonthly injection of cabotegravir/rilpivirine, is a promising HIV treatment option. LAI ART may particularly benefit people who are reluctant to initiate or are poorly adherent to daily oral pills and not virally suppressed. However, the acceptability and feasibility of LAI ART among individuals with viremia in Africa has not been well studied. We conducted qualitative in-depth interviews with 38 people living with HIV with viral load ≥1000 copies/mL and 15 medical and nursing staff, and 6 focus group discussions with peer health workers, to examine acceptability and feasibility of LAI ART in south-central Uganda. Transcripts were thematically analyzed through a team-based framework approach. Most people living with HIV reacted positively toward LAI ART and endorsed interest in taking it themselves. Most felt LAI ART would make adherence easier by reducing the challenge with remembering daily pills, particularly in the context of busy schedules, travel, alcohol use, and dietary requirements. Participants also appreciated the privacy of injections, reducing the likelihood of stigma or inadvertent HIV serostatus disclosure with pill possession. Concerns about LAI ART included side effects, perceived medication effectiveness, fear of injection, and medical mistrust and conspiracy beliefs. Health workers and participants with viremia also noted health system challenges, such as stockouts and monitoring treatment failure. However, they felt the health system could overcome these challenges. Implementation complexities must be addressed as LAI ART is introduced and expanded in Africa to best support viral suppression and address HIV care continuum gaps.

The Acceptability of Self-Collected Samples for STI Testing: A Qualitative Study Among Adults in Rakai, Uganda.

Introduction: Self-collected samples (SCS) for sexually transmitted infection (STI) testing have been shown to be feasible and acceptable in high-resource settings. However, few studies have assessed the acceptability of SCS for STI testing in a general population in low-resource settings. This study explored the acceptability of SCS among adults in south-central Uganda. Methods: Nested within the Rakai Community Cohort Study, we conducted semi-structured interviews with 36 symptomatic and asymptomatic adults who self-collected samples for STI testing. We analyzed the data using an adapted version of the Framework Method. Results: Overall, participants did not find SCS physically uncomfortable. Reported acceptability did not meaningfully differ by gender or symptom status. Perceived advantages to SCS included increased privacy and confidentiality, gentleness, and efficiency. Disadvantages included the lack of provider involvement, fear of self-harm and the perception that SCS was unhygienic. Most participants preferred provider-collected samples to SCS. Nevertheless, almost all said they would recommend SCS and would do it again in the future. Conclusion: Despite a preference for provider-collection, SCS are acceptable among adults in this setting and support expanded access to STI diagnostic services.

Capacity to Consent to Research Among Adolescent-Parent Dyads in Rakai, Uganda.

OBJECTIVES: To assess the cognitive capacity of early, middle, and late adolescents and their parents or guardians to provide informed consent to a population-based cohort study. STUDY DESIGN: Adolescent-parent/guardian dyads including 40 early (n = 80; 10-14 years), 20 middle (15-17 years), and 20 late (18-19 years) adolescents were recruited from the Rakai Community Cohort Study, an open demographic cohort in Uganda. Participants were administered the MacArthur Competence Assessment Tool for Clinical Research, a structured open-ended assessment; interviews were recorded and transcribed. Twenty transcripts were scored independently by two coders; the intraclass correlation coefficient was 0.89. The remaining interviews were scored individually. We compared mean scores for early and middle/late adolescents using a one-sided t test and score differences between parent/guardian and adolescent dyads using two-sided paired t tests. RESULTS: Early adolescents (mean score, 28.8; 95% CI, 27.1-30.5) scored significantly lower (P < .01) than middle/late adolescents (32.4; 31.6-33.1). In paired dyad comparisons, we observed no statistically significant difference in scores between parents/guardians and middle/late adolescents (difference, -0.2; 95% CI, -1.0-0.6). We found a statistically significant difference in scores between parents/guardians and early adolescents (difference, 3.0; 95% CI, 1.2-4.8). CONCLUSIONS: The capacity of adolescents-of different ages and in diverse settings-to comprehend risks, benefits, and other elements of informed consent is a critical but understudied area in research ethics. Our findings support the practice of having middle and late adolescents provide independent informed consent for sexual and reproductive health studies. Early adolescents may benefit from supported decision-making approaches.

Social Influences on Engagement With HIV Testing, Treatment and Care Services Among Men Who Have Sex With Men Living in Rural Uganda.

Men who have sex with men in Uganda are a heterogenous, discriminated population, experiencing high HIV burden, limited access to HIV testing, and low treatment adherence. We contribute to the lack of information about men who have sex with men in rural Uganda by using socio-ecological analyses to examine the social influences shaping their engagement with HIV services. Based on in-depth interviews with 16 men, our findings reveal the inhibitive influence of interpersonal relationships with sexual partners, peers and families, and institutional influences within health service and non-governmental organizational settings. Yet men take action to strategize and seek support to enhance engagement with HIV care in heavily criminalized and stigmatized settings. Future HIV prevention, testing, treatment, and care responses could draw on what affected individuals and communities are already doing to enhance access to HIV services and the effective support strategies of some non-governmental organizations and healthcare workers.

Understanding and managing HIV infection risk among men who have sex with men in rural Uganda: a qualitative study.

BACKGROUND: Same-sex sexual relations are criminalised in Uganda, and men who have sex with men (MSM) experience a high burden of HIV infection. In Uganda, health promotion policies focus on equity in healthcare and creating enabling environments. At present there is limited evidence upon which to enhance engagement of MSM in rural settings into effective HIV prevention. To fill this gap, our study explored MSM's understandings of HIV risk and strategies used to reduce HIV risk in their sexual lives. METHODS: In-depth interviews were conducted with sixteen MSM in rural communities in Southwestern Uganda. Inductive thematic analysis examined men's perceptions of HIV risk and strategies of reducing their own HIV risks. RESULTS: Understandings of HIV risk and risk practices were framed by lack of access to condoms, challenges negotiating condom and pre-exposure prophylaxis (PrEP) use, and condomless sex being reported as more pleasurable than sex with condoms. Strategies men perceived as enabling them to manage HIV risk included: PrEP use; condom use; knowing partners' HIV status; avoiding partners associated with HIV risk; oral sex; withdrawal before ejaculation and washing one's penis after sex. There were several misconceptions arising from poor HIV prevention knowledge. Strategies reliant on communication and negotiation with sexual partners were inhibited by gendered powered imbalances. CONCLUSIONS: Our findings illustrate that MSM in rural settings in Uganda are making concerted efforts to implement strategies that might reduce risk of HIV transmission and infection within their sexual relationships. Key HIV health promotion and service-related strategies to support MSM with these efforts include an effective condom and lubricant supply chain; a PrEP program in trusted local health units, implemented via discreet community-outreach mechanisms; and same-sex specific HIV-related health promotion.

The Promise and Peril of Mobile Phones for Youth in Rural Uganda: Multimethod Study of Implications for Health and HIV.

BACKGROUND: In East Africa, where landlines are used by 1% of the population and access to the internet is limited, owning a cell phone is rapidly becoming essential for acquiring information and resources. Our analysis illuminates the perils and potential promise of mobile phones with implications for future interventions to promote the health of adolescents and young adults (AYAs) and to prevent HIV infection. OBJECTIVE: The aim of this study is to describe the current state of AYAs' phone use in the region and trace out the implications for mobile health interventions. METHODS: We identified 2 trading centers that were representative of southern Uganda in terms of key demographics, proportion of cell phone ownership, and community HIV prevalence. We stratified the sample of potential informants by age group (15-19 years and 20-24 years), gender, and phone ownership and randomly sampled 31 key informant interview participants within these categories. In addition, we conducted 24 ethnographic participant observations among AYAs in the communities of study. RESULTS: AYA frequently reported barriers to using their phones, such as difficulty accessing electricity. Nearly all AYAs used mobile phones to participate in the local economy and communicate with sexual partners. Phone use was frequently a point of contention between sexual partners, with many AYAs reporting that their sexual partners associated phone use with infidelity. Few AYAs reported using their phones for health-related purposes, with most getting health information in person from health workers. However, most AYAs reported an instance when they used their phone in an emergency, with childbirth-related emergencies being the most common. Finally, most AYAs reported that they would like to use their phones for health purposes and specifically stated that they would like to use their mobile phones to access current HIV prevention information. CONCLUSIONS: This study demonstrates how mobile phones are related to income-generating practices in the region and communication with sexual partners but not access to health and HIV information. Our analysis offers some explanation for our previous study, which suggested an association between mobile phone ownership, having multiple sexual partners, and HIV risk. Mobile phones have untapped potential to serve as tools for health promotion and HIV prevention.

"Men are always scared to test with their partners it is like taking them to the Police": Motivations for and barriers to couples' HIV counselling and testing in Rakai, Uganda: a qualitative study.

INTRODUCTION: Uptake of couples' HIV counselling and testing (couples' HCT) can positively influence sexual risk behaviours and improve linkage to HIV care among HIV-positive couples. However, less than 30% of married couples have ever tested for HIV together with their partners. We explored the motivations for and barriers to couples' HCT among married couples in Rakai, Uganda. METHODS: This was a qualitative study conducted among married individuals and selected key informants between August and October 2013. Married individuals were categorized by prior HCT status as: 1) both partners never tested; 2) only one or both partners ever tested separately; and 3) both partners ever tested together. Data were collected on the motivations for and barriers to couples' HCT, decision-making processes from tested couples and suggestions for improving couples' HCT uptake. Eighteen focus group discussions with married individuals, nine key informant interviews with selected key informants and six in-depth interviews with married individuals that had ever tested together were conducted. All interviews were audio-recorded, translated and transcribed verbatim and analyzed using Nvivo (version 9), following a thematic framework approach. RESULTS: Motivations for couples' HCT included the need to know each other's HIV status, to get a treatment companion or seek HIV treatment together - if one or both partners were HIV-positive - and to reduce mistrust between partners. Barriers to couples' HCT included fears of the negative consequences associated with couples' HCT (e.g. fear of marital dissolution), mistrust between partners and conflicting work schedules. Couples' HCT was negotiated through a process that started off with one of the partners testing alone initially and then convincing the other partner to test together. Suggestions for improving couples' HCT uptake included the need for couple- and male-partner-specific sensitization, and the use of testimonies from tested couples. CONCLUSIONS: Couples' HCT is largely driven by individual and relationship-based factors while fear of the negative consequences associated with couples' HCT appears to be the main barrier to couples' HCT uptake in this setting. Interventions to increase the uptake of couples' HCT should build on the motivations for couples' HCT while dealing with the negative consequences associated with couples' HCT.

Importance of relationship context in HIV transmission: results from a qualitative case-control study in Rakai, Uganda.

We present results from life history interviews with 60 young adults from southern Uganda. Using a novel qualitative case-control design, we compared newly HIV-positive cases with HIV-negative controls matched on age, gender, marital status, and place of residence. Relationship context was the most salient theme differentiating cases from controls. Compared with HIV-negative respondents, recent seroconverters described relationships marked by poorer communication, greater suspicion and mistrust, and larger and more transitory sexual networks. Results highlight the importance of dyadic approaches to HIV and possibly of couple-based interventions. Using HIV-matched pairs allowed additional understanding of the factors influencing transmission. This hybrid methodological approach holds promise for future studies of sexual health.